Survey

Autism Women Matter conducted a survey with the first 100 responses collated into our survey results. The survey conducted on the 20th November 2013 and submitted as our contribution to the Autism Strategy Review.

Autism Strategy Review Contribution

100 Asperger Women Contributions

Author: Monique Blakemore

Part One

Asperger Women & Diagnosis

Of the surveyed women, 61.62% have been formally diagnosed with ASC and 38.8% of women self identify as being ASC. A measure of the effectiveness of the diagnostic pathway can be obtained through the self identification of ASC and the funding support for a diagnosis.

A. Self Identification of ASC

61.62% have been diagnosed with an Autism Spectrum Condition / Asperger Syndrome

16.16% self identify as being autistic but have not been able to access a diagnostic assessment

17.17% self identify as being autistic and have not sought a formal diagnosis

5.05% have been assessed and not diagnosed as they feel the psychologist they saw did not have a good understanding of asperger women: and self identify as being autisti

B. Funding Support for Diagnosis

28.57% self funded their diagnosis

63.49% obtained a diagnosed through the NHS

7.97% obtained a diagnosis with funding support from a charity

The diagnosis pathway can be unclear with women reporting difficulties in being referred by their GP for assessment. The ‘coping’ mechanisms employed by women are often referred to as ‘masking’ (learnt behaviours from observation and mimicking their peers) and can be a barrier to a diagnosis and accessing service provisioning.

In Their Own Words:

“I was an extremely quiet child and internalised everything. I watched and mimicked those close to me. When I was uncomfortable I would avoid situations and have been diagnosed with several anxiety disorders as well as depression. Reading about Asperger’s in women has given me hope that I do ‘fit in’ within a certain group of women”

“…women get neglected because other people are not affected by their difficulties…”

“If you tested all women diagnosed with bi-polar disorder, anxiety, depression or anorexia you’d probably find most are actually misdiagnosed and are on the Autism Spectrum which exacerbates their suffering, alienation and inability to achieve in life”

Part Two

Asperger Women & Sexual Identity

Asperger women report to have good understanding of the biology of sexual function but require assistance in the formation of positive view of sexuality, awareness of relationship boundaries and enforcing those boundaries.

74.75% identify as heterosexual

10.1% identify as bi sexual

2.02% identify as asexual

2.02% identify as gay

11.11% preferred not to respond to the question

As a ‘self reported’ survey the results are closely aligned with the 68% heterosexual results of the ‘Sexual Wellbeing of a community sample of high functioning adults on the autism spectrum who have been in a romantic relationship’ research study (http://aut.sagepub.com) that draws conclusion of specific areas of need for females with an ASC.

In Their Own Words

“…his text’s all the time asking to come over and then he starts to call. If I don’t answer the phone he comes over and bangs on the door. It does my head in and I want him to stop so if I just do what he wants and then I get left alone”

Part Three

Relationship with Social Services

Worker is discussing an autistic child’s needs they must be aware that they may be having that conversation with an autistic person. Autistic parenting, an autistic person parenting autistic children, has been a neglected area of support and identification.

44.90% are not unknown to social services by not meeting criteria for support or believing they only help certain individuals

17.35% do not engage with social services through fear/anxiety of how they will be judged as an autistic person

15.31% receive support from Social Services and feel under-supported and that their parenting is judged

15.31% believe Social Services are helpful but lack resources

7.14% believe Social Services are very helpful, understand their needs and provide appropriate support

Thus far research has focused on paternal parenting as a deficit model and this stereotype can hinder a woman’s willingness and ability to access Social Services support that a non autistic parent of autistic children may not. There is a general perception that Social Services may misinterpret the autistic person and not understand what has been described as ‘autistic family culture’.

There is a fear that the diagnostic ‘lack of empathy’ would be used against them as mother’s hinders asking for meaningful supports. The fear of how professionals may interpret their ability to parent if autistic hinders their willingness to disclose (where already diagnosed) or seek an assessment.

For some autistic women, parenting becomes their focus and they adopt a diligent parenting style. A parent that may appear’ overzealous’ & alongside communication difficulties may be perceived as ‘Fabricated Illness’.

Once entered into social care involvement some women that self identify as autistic may require a diagnosis but the NHS pathway is too long when the family needs to be placed in context immediately. The social services involvement is long and the processes for an autistic family can be extremely disruptive leading to an escalation of concerns (SS visits to the home or school without warning at any time).

There are many fantastic mothers who are intuitive to their child’s needs, others that are terrific problem solvers and advocate well to meet their child’s needs and there are other mothers who need support in that role. But, there needs to be recognition of the differing parenting styles and some reasonable adjustments for families. An example, a child falls over and the mother doesn’t rush to comfort. The child prefers time to process that pain before being touched and spoken to. The parent is meeting the need of their autistic child but from a social service perspective she may be showing no empathy and neglect.

In Their Own Words:

”I went through a S47 when I trying to get educational statements for my kids and they said I was ‘emotionally abusing’ them by focusing on the problems. For every referral I got for the kids the GP agreed with me to make the referral and as part of the care proceedings the kids were later diagnosed. It was only when a charity paid for my assessment that the professionals started to understand me better and now the kids are on ‘child in need’ and taken off care protection. It does make me wary of going for help now”

Part Four

Understanding of Need

Women were asked who they believe have the clearest understanding of their home life and family needs.

51.02% from family and friends

27.55% receive no support

7.14% from their GP

4.08% are supported by Social Services

3.06% through autism services

3.06% by the child’s paediatrician

2.04% Child and Adolescent Mental Health service

2.04% autism charities

This response highlights the need for services to understand the need of autistic parents in order to be responsive and develop meaningful service provisioning as 27.55% of autistic mothers feel they have no one that understands their parenting role and 51.02% receive informal understanding from their social and family structures.

In Their Own Words:

“I fall apart at home after the stress of playing ‘actress’ and fear over having got it wrong”

Part Five

Identifying Areas of Need

Women were asked to rank in order of importance the areas in which they most need support.

In Their Own Words:

“ I have issues with disipline and household routine sometimes as if i get sensory overload i go very passive so i will not shout or demand better behaviour instead i go non verbal and im lucky that my children and I are close and id rather have a happy home than a tidy one”

“I have been full of self loathing as ‘the shoutey mum’ and I don’t want to be that mum but it was hard to know when I was heading for a meltdown and what a meltdown is or me”

Part Six

Pregnancy

Asperger women report the need to feel more empowered about their birthing day and their experience is reliant on three factors including; clear communication, sensory adjustments and change management. In their own words, asperger women describe their experiences.

Communication

“During birth need to be more reassuring and explain each stage clearly to reduce anxiety”

“Telling people their actually rights, but that could be improved across the board lots of people won’t challenge or ask the questions they need to”

“Please explain clearly that a new midwife is taking over your case and not just leave and a new one walks in”

Literal Interpretations

“I was told to push again for next delivery when I asked why they said “second baby” and laughed – they meant placenta but I was terrified as I thought they meant twins”

“Focused interest (I was dead keen to read up about pregnancy and birth, looking after children, etc). Still took lots of stuff literally, like spending ages thinking of questions to ask the health visitor at appointments, until she told me I was over protective and worried too much. Actually, I wasn’t, I just THOUGHT I had to ask questions.”

Self Advocacy & Birth Plans Incorporating Autistic Needs

“We specified what we were happy with. Anyone can do that, they just don’t always know. Women in general need to be more empowered about their birthing day and experience”

“I delivered all mine in the hospital and I definitely cold have used somebody who knew what they were doing to advocate for me and let me know what was going on. Without the money to pay for someone that just wasn’t an option”

“What would be great would be to feel as though I was an active participant in the whole process of pregnancy and birth and to be able to take time over making decisions.”

Sensory Needs

“People coming in and out of the room were disruptive. I ended up locking myself in the bathroom in the dark for 8 hours of my labour. I had the same repetitive soothing music on for pretty much the whole labour”

“The ward was hell on earth, I can’t sleep with strangers in the room so I was awake all night, and my baby screamed all night, none of the midwives helped me. I hated the noise, the chaos plus my vomit phobia meant my anxiety levels were through the roof”

“They dimmed the lights for me and let me play the music I wanted even though it was 80’s pop instead of clam music”

“I had a home birth with two private midwives, I was well supported. I felt safer and more comfortable at home rather than going to hospital with strangers and bright lights. I did a lot of research … I had my son by candlelight, my husband in the pool with me. Sensory wise I didn’t want to be touched unless I asked for it, I also didn’t want talking, and I had quiet music”

High Pain Threshold, Support Not Given

“The main thing was that they didn’t believe me when I said it was nearly time to give birth. I didn’t make any noise and was so quiet going through contractions that they said I couldn’t be anywhere near ready. When they checked I was fully dilated and had to be taken straight down to the labour suite”

“Hard time convincing them I was in labour so had only under 30 minutes of being believed “

Regret When Birthing Experience Not Positive

“Sometimes I wish I could have another baby to experience birth the way I wanted it to be …”

“I loved it when I was alone and at peace. I hated being on the ward as it was so noisy and smelly”

Breastfeeding

“I loved having that time to just sit and be with my baby. It gave me the excuse to have time out from everyone and everything and just sit and be still with my child”

“I was lucky to be in a room on my own with just a nurse to check on me and help the babies to latch on. This really helped me from a sensory point of view”

“Breast feeding was something to endure but I did it for 6 months. For at about 3 years, I couldn’t face the prospect of having another baby.”